high dosage IVIG : how long to wait?

[greekdude]

We are considering high dose treatment for our son. He used to have lots of anxiety, OCDs, separation anxiety, sleeping with us, sensory problems, and finally fell to severe anorexia in late 2019. Hospitalized Oct 2019 - Jan 2020.

Long story ... well long ..

1) The day he was born (apr 2005) he was considered by the hospital "overweight" (4Kg) (but also 55cm in length) so they took him away to some sort of emergency room away from his mom.

2) two months after, severe otitis, two weeks in the hospital.

3) constant otitis from then on, he fought this with the help of homeopathy, and in extreme cases with Xozal (cortizone)

4) till the age of 10 he was a happy healthy (otitis aside) kid, good in school and in basketball. But he wanted to sleep with us. Rarely slept alone

5) from 10yrs old on, otitis episodes start to become less and less, he stop the homeopathy, the kid starts closing to himself, stops basketball

6) 12 yrs, he is diagnosed with hypothyroidism, starts to sleep alone, starts restricting food , anxiety becomes worse, gets bullying in school

7) 14 yrs, anxiety, OCDs, ceremonies in the bathroom, even more food restriction , becomes 180cm tall, 48Kg . Weird thing he was gaining height through the whole anorexia period.

😎8 ) 14.5 yrs, diagnosed with AN (anorexia nervosa), the hospital takes him from us. spends 3.5 months in there , gets out 182cm , 62Kg

9) since no FBT in Greece, we start feeding , feeding and feeding more , following the FBT school, believing that Anorexia was a 3rd evil external spirit responsible for any misfortune we had

10) some net-friend whispers me about PANS/PANDAS . I read the criteria and thought our S fulfills the PANDAS criteria. We saw a doctor from the USA, he told us 80% PANDAS and ordered some exams and to try a 14 days intensive abx test. He didn't respond to the test in a massive manner, but his bloodwork was very PANDAS-y, high ASO, very high Anti-DNAse-b , and serum IgE . So we are heading for tonsillectomy and afterwards for IVIG.

Has anyone gone through this? What should we expect in every step?

[Chemar]

Hi greekdude

Sorry you have not had a reply yet.

I know more about Tourette Syndrome than PANDAS, so can't be of help other than to suggest you look at the pinned threads on this forum as there is a wealth of information there.

Hopefully someone with PANDAS knowledge will be by soon to offer you some help

[ejh]

Greekdude. I am just reading this now. I hope your son has had treatment in the mean time. Your son sounds like mine. Also anxiety, OCD, sleeping with me, sensory problems, periods of sudden severe separation anxiety, and AN symptoms started at age 11. Diagnosed at age 12 following major strep induced flare. Treated with antibiotics which did not do much, then tonsillectomy and IVIG. After 4-6 months he was a different kid. No more anxiety, OCD, food restriction, sensory problems, sleep problems. He is now 18 and he gets symptoms sometimes with infection but they go away. About once a year they don’t go away and instwad continue to get worse. He then gets high dose iv steroids and that takes care of it. 
 

I hope your son has received treatment, if not I do recommend IVIG. They also use rituximab now. 

[kitkatlilly]

I have a question-Is 0.5g per kg of IVIG considered high dose and a safe dose for Pandas?

 

Edited June 30, 2021 by kitkatlilly